Is this mischief making (I shall employ the phrase beloved of Simom Wessely) 'par excellance'?

Abide by the rules or don't post. Using language such as 'wake up' and 'you, you, you' and annoying little insults like 'sheeple' displays a complete lack of empathy with fellow suffers. Either that or this post was indeed, what is known in the UK, as a 'wind up'.

Anyone would think we fellow Phoenix Forum members lived in some kind of bubble. Sadly unaware of the facts. I no longer trawl the internet for information. I rely on members here. A little bit selfish I know, but all the same, why look any further?

Every possible point of view/illness type/length of illness/race/ gender/creed/personality type/jokers/scientists/advocates are represented here. We may be having a few ups and downs, but I for one wish to remain here, whether or not XMRV pans out, simply because I have met so many genuine lovely human beings.

They've not played the PR well, especially in so much as it is directed at the science community, and instead they sometimes seem to behave like an advocacy group. Right from the start I was concerned that this could undermine them if the link between XMRV and CFS proved difficult to confirm or false, and from my reading of science blogs etc, it seems that it has begun to. I really wish they'd been more cautious in their approach right from the start.

The VIP DX thing can look dodgy, but, assuming they're not completely lying about it, I don't think it really is. But they should have been able to predict people's concerns in advance, and provdied clearer exlanations from the start.

A lot of people here were really pleased the WPI took such an aggressive stance, and I'm not sure if there are now some regrets about this, but I certainly wish things had been played differently.

Is this mischief making (I shall employ the phrase beloved of Simom Wessely) 'par excellance'?

Either that or this post was indeed, what is known in the UK, as a 'wind up'.

Click to expand...

I agree Adam, I thought as soon as I read it 'wind up', my apologies to Veritas if it isn't. The use of the phrase 'found a cure' is telling, we all know there are some treatments out there some more effective than others, but cure? no. If I was the Whittemores I would have been very insulted and hurt by the comment about their daughter, very unpleasant.

I've heard the sob story about the Whittemore's, and how they're in this to help us. Maybe they have the bst of intentions, however Harvey Whittemore built his $2 billion business empire by being a shrewd businessman.

Why solicit funds if you have over $2 billion in assets? If my daugter was sick with CFS, and I had unlimited funds, I would have paid for a cure years ago...

Click to expand...

Moderators, any chance this thread can be locked/deleted?
This person seems to have registered here purely for making potentially defamatory claims against Harvey Whittemore. The above can be easily refuted by looking on the Forbes list, where surprise, surprise Harvey Whittemore is nowhere to be found.

Moderators, any chance this thread can be locked/deleted?
This person seems to have registered here purely for making potentially defamatory claims against Harvey Whittemore. The above can be easily refuted by looking on the Forbes list, where surprise, surprise Harvey Whittemore is nowhere to be found.

I've been living in France for 4 years now and have seen my local GP exactly three times. The reason being is that I've had 20 years of dealing with GPs in the UK and with only frustration as a result. Secondly the cliche is that the French are the world's biggest pill poppers and French GPs just love to dish out drugs. However I needed to inform my GP of my illness as he is my primary (only) medical practitioner.

The first time I saw him, I introduced myself and handed him a summary of my symptoms over the years. He read them and told me that in France, they don't believe in 'this illness' but suggested I should try antidepressants -just on the off chance. I agreed (not good to be seen refusing treatment) but told him of my reservations as I wasn't depressed and had problems with prescription drugs. A bad start and I assumed that I was dealing with the usual medical bureacrat. Second visit I gave him a copy of the WPI Science paper which at least he agreed to read. I hadn't picked up the prescription for antidepressants and told him so. He didn't seem too upset by this.

Third visit he had printed off a paper for me (in French) on Fibromyalgia and what the paper termed 'idiopathic fatigue syndrome'. I tried to explain that FM wasn't my problem. He was very adamant that I should read his paper though as it was 'completely independent of any drug company bias'. I read it and it was a meta analysis of all the commonly used pharmaceutical treatments for FM, excluding any results of studies funded by pharma companies. The results were enlightening. No compound gave results significantly better than placebo and once side effects were considered, none were recommended. The recommended treatment was that patients should try to live within their limits - in other words pacing. In return I gave him a French copy of the Canadian Consensus Document which impressed him but he was still concerned about pharma input into it. The doc then asked if there was anything else he could prescribe; When I declined he agreed saying that my body had enough to cope with without adding in drugs.

My French bureacrat GP turns out to be an anti-Pharma radical. Which is great - shows he has an open mind, BUT :

Either his English or my French is going to have to improve a lot before I can explain to him that in the case of ME - 'big Pharma' isn't the enemy. We're being screwed by governments and their agencies who refuse to take us seriously or give us any treatment. Ironically, 'big-Pharma' may be our only hope of salvation.

So I'm not too concerned over any suggested conflicts of interest as far as physiological research is concerned. If it takes the profit motive to crack this illness then so be it. Certainly appealing for understanding, justice or to peoples better natures hasn't got us very far in the past.

Click to expand...

Marco, you're probably right. But as I was reading your post a crazy idea popped into my head. What if the big secret the UK government has put under "confidential" for another 50 years is that there is already an existing drug or drugs, off patent and cheap, that could successfully treat this illness? Say....LDN....or artesunate...or...some magic combination. No more profit for the antidepressant makers. No more psych cures. And what fun to keep the ME/CFS community off balance with all this melodrama..

I understand the concept of conflict of interest. It always looks bad when someone is making money off a cause where they are supposed to look like a crusader. But what is the alternative. Harvey believed that he needed a lab to do testing as part of the WP Institute. So he bought one. Or maybe he bought this before WPI to offer CFS testing. That's what it did. What's wrong with that. Should he only buy things that don't help our cause? Like maybe another shopping center. Then he has no lab. There is an advantage having our own lab, rather than contracting.

What about making money off this. Well, it looks like conflict of interest. But what should he do with the money the lab makes, assuming it's profitable. Give it to the Red Cross? It makes much more sense to have a lab that that can be self sustaining. Or maybe he could have refused to offer the XMRV test, so the lab makes no profit from XMRV. What's the point of denying this test the the community, while other labs offer it. Is it better for the community if only labs other than VIPDx are testing.

I see your point. I really do. If people are officers in a business or make money from a business they might become conflicted and make decisions that lean more toward making money and less toward what is in the best public interest. OTOH, if he can give the lab away. Then what. Someone without a stake in our futures owns it, and do you think a stranger to our cause is going to be more altruistic.

Anyway, appreciate that you are braving some less than polite comments being directed at you. And I think your point is well made. But ownership does not equal dishonesty, even though it can be a risk. And passing ownership onto someone else only transfers profit and control to someone else, and i fail to see an advantage in that. But I do appreciate that you looked this up and shared it. I just think there is more than one way this can be seen.

The WPI and their XMRV "discovery" is not all that it seems to be. Please, dig a little deeper people...

Who holds the patent for the reagents used in WPI's initial XMRV study? Why have the reagents from the study not been shared with other researchers who are attempting to replicate the findings?

The announcement of XMRV discovery was very well choreographed. 10/08/09: Science XMRV publication; 10/29/09: Dr. Peterson CFSAC presentation; 11/05/09: WPI press release announcing that VIP Dx is offering a lab test for XMRV; Mid-November 2009: WPI changed their website to state that none of the 101 patient cohort were from Petersons bio bank, and that none of the 101 patients had cancer. At least 4 patients from the Science study had cancer, according to Petersons CFSAC presentation (WPI-1118, WPI-1125, WPI-1150, WPI-1199). How many other patients had cancer? WPI states: Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication. (http://www.wpinstitute.org/research/research_biobank.html) If WPI isnt forthcoming about this, how reliable is the info about the patient cohort or any other details about the study?

Why didnt WPI disclose that Harvey Whittemore is the sole owner of VIP Dx, and has been since 2005? Why doesnt WPI disclose that Judy Mikovits is the Vice President of VIP Dx, or that Vincent Lombardi is the Treasurer of VIP Dx? Clearly this is a conflict of interest and unethical. All parties involved have a financial motivation, and this has been cleverly hidden from the patient community.

Fact: Harvey Whittemore owns 100% of VIP Dx, (also known as Redlabs USA), and was the company President until 12/29/09.

all those interests are and were declared.Compare the science in the WPI methodplogy to those in the other studies(assuming that you can find any)The interests of the psychos makinga mint out of cbt studies inurance companies are not declared>this despite the fact that having a virus being the cause of ME will leave their academic careers in ruins with all that entails.perhaps.A better target would be the shoddy science and the highly suspect motives of the other trialists let by the psychological lobby.

Please don't lock this. Criticism brings responses that brings out truth. While the allegations of motives are not proven, the Whittemore's have put themselves in this position so their motives can be questioned legitimately. I don't see the boogie man behind the curtains that veritus sees. But I have no problem with the debate. When a person is a public figure and in position of power, then how and why they use that power is ok for debate.

Veritus, I am afraid you lost me on the claim they are not sharing. Two reasons:
1) Mikovitz listed on Jan. 22 about eight different labs they are working with. Now come on, if they were not sharing with these labs, how stupid would it be to put that out there publicly, on video on the Internet?
2) WPI has strong motivation for labs to confirm their findings. Whether it is for status (go down in history), altruistic desire to help the afflicted, or pure money, the motivation is there for them to do all they can to help other labs confirm their findings.

So, I am afraid that I doubt your claims of fact, and I don't agree with your conclusions. For homework, maybe you should listen to the Jan. 22 speech. And again if you already have.

(by the way, good points, Andrew)

Now, to the issue of conflict of interest. First off, there was no need to reveal anything about VIP lab in the Science journal paper, to my understanding. The offering of tests for fee did not come up until after the paper was published. And there is altruistic motives possible there also. They need blood to test for further studies. Very expensive to get people in study. So, if people want to pay them to give them their blood, then better them than someone else. And there they have blood for research, all of this reduces future study costs, which then allows them to do more with less. And isn't this the goal of all non-profits? And as far as I am concerned, if VIP is a for profit, then they don't have to explain where the money goes. Just as Labcorps, etc. doesn't have to explain what they do with the profits. If they are non-profit, then they should. I understand they have revealed this.

I have no problem with their patent. They deserve it. And any money they make off the patent will go to more research for us. As Kurt said, whether it is non-profit or for profit, it is standard. Are you upset that DeFreitas got a patent for her discovery? It's the way things are done. It may not be perfect, but it is within the norm. Some drug companies may want patents so they can make megabucks for their shareholders. Some labs want patents so they get more money for their lab work. We are fortunate that WPI is non-profit. But even if they were for-profit, so what? They are working to help us. And if they do, then more power to them (and money too). Would I rather big pharma have made this discovery?

Also, I don't think the timing was orchestrated. They were going back and forth with Science trying to get it published. They started much earlier. She was finding the virus as early as January before. By May, I think they were ready, they thought. But it was the reviewers and editor that prevented them from being published by demanding more proof and toned down wording. But, they were smart to hold back from revealing anything until publication and they were smart to go for the big whopper, Science journal. Now, their PR after that, well, a few mistakes have been made. Mikovitz even admitted that. They are under a lot of pressure, people, including CFSAC, want to know more, more, and more, and now their findings are being questioned. So, mistakes have been made under these pressures.

But, the discussion here has sure been interesting, so for that alone, I am glad you posted. Nothing like waking up to this in the morning.

What about making money off this. Well, it looks like conflict of interest. But what should he do with the money the lab makes, assuming it's profitable. Give it to the Red Cross? It makes much more sense to have a lab that that can be self sustaining. Or maybe he could have refused to offer the XMRV test, so the lab makes no profit from XMRV. What's the point of denying this test the the community, while other labs offer it. Is it better for the community if only labs other than VIPDx are testing.

Click to expand...

Andrew,

The Whittemores have taken steps to eliminate any conflict of interest with respect to VIP Dx. They can't make a dime from it. See my previous post #15.

"WPI Research Scientist and co-author of the Science paper, Dr. Vincent Lombardi, is providing technical assistance and oversight of the VIP Dx testing. In exchange for the non-exclusive license, VIP Dx will pay a royalty to WPI for each test it conducts.

“We structured the licensing contract to be sure that any and all profits that might emerge at VIP Dx from XMRV testing come directly back to WPI to benefit the research program” said Whittemore.

Dr. Lombardi is an employee of WPI, and has no personal financial interest in VIP Dx. Likewise, the Whittemore family put their interest in VIP Dx into a trust to benefit WPI.

The availability of these tests has a dramatic impact to the CFS/ME community. These tests allow licensed laboratories to begin answering important questions about XMRV’s incidence in disease and prevalence in the world. WPI hopes that this will generate further research related to XMRV. "The institutes’ driving goal continues to be the translation of research to meaningful results for patients, explained Whittemore."

Personally, I don't think the WPI have behaved unethically.
But I understand why some have gotten the impression that they have.
They've not played the PR well, especially in so much as it is directed at the science community, and instead they sometimes seem to behave like an advocacy group. Right from the start I was concerned that this could undermine them if the link between XMRV and CFS proved difficult to confirm or false, and from my reading of science blogs etc, it seems that it has begun to. I really wish they'd been more cautious in their approach right from the start.

Click to expand...

Agree, why has WPI taken on the advocacy role at the same time as attempting to change the paradigm of CFS research to something resembling AIDS research? That was a big gamble and they have taken us all along for an unexpected ride with an uncertain outcome. In my opinion they should have formed two organizations if they wanted their own advocacy. One for research and a separate organization for CFS advocacy.

Abide by the rules or don't post. Using language such as 'wake up' and 'you, you, you' and annoying little insults like 'sheeple' displays a complete lack of empathy with fellow suffers. Either that or this post was indeed, what is known in the UK, as a 'wind up'.

Click to expand...

Yes, Veritas' post violated the rules on use of language. However responses have also violated rules so nobody wins the moral high ground on that point. Anyway, it was not against the rules to raise questions, including about WPI and their ethics. I think the ethics claim has been put to rest by other comments, that is the purpose of discussion and debate in my view. But there is no reason to exempt WPI or the Whittemores from the same careful review that all the other players here are being given. We just have to maintain the proper decorum of the forum...

Moderators, any chance this thread can be locked/deleted?
This person seems to have registered here purely for making potentially defamatory claims against Harvey Whittemore. The above can be easily refuted by looking on the Forbes list, where surprise, surprise Harvey Whittemore is nowhere to be found.

Click to expand...

There is no reason I can see to lock or delete this thread. In fact I think it is good to respond to questions like this, to display only one side of an issue is, well propaganda, and if this forum turns one-sided like that I personally would want no part of it.

You raise a good point that has not been mentioned yet, what about that comment that Harvey Whittemore is worth $2 Billion? I wonder if he knows about that? Seriously, having $2 Billion in assets does not mean one is a billionaire, what are his liabilities? You have to look at net worth, is that his net worth? Also that might be an optimistic estimate of the value of his Coyote Springs, NV development, which would be only a valuation based on future development, that is not realized yet. In fact with the current economy I suspect the prospects for that golf/resort town might change.

Veritus, I am afraid you lost me on the claim they are not sharing. Two reasons:
1) Mikovitz listed on Jan. 22 about eight different labs they are working with. Now come on, if they were not sharing with these labs, how stupid would it be to put that out there publicly, on video on the Internet?
2) WPI has strong motivation for labs to confirm their findings. Whether it is for status (go down in history), altruistic desire to help the afflicted, or pure money, the motivation is there for them to do all they can to help other labs confirm their findings.
So, I am afraid that I doubt your claims of fact, and I don't agree with your conclusions. For homework, maybe you should listen to the Jan. 22 speech. And again if you already have.

Click to expand...

Mikovitiz mentioning labs they ARE working with does not prove anything about others they may not be sharing with. But that is not public information that I am aware of, however I have also heard backchannel of frustration of some labs that WPI is not forthcoming with help or information. Anyway, her presentations are not the best place to learn whether they are cooperating with outside labs, talk to some of the other labs and you may get a different story.

You would think WPI has a motive to share but actually, if they are applying for patents their motive may be to share only with a select group of insiders. This is a common problem in research, not just for this case. You have to publish information publicly but if you give everything away you may never profit from your discovery. So sometimes publications are deliberately cryptic. WPI did not invent this scenario, and I would be really disappointed in them if this is happening, it is certainly a possibility.

We are a fairly desperate bunch and as such, ripe for the picking. The WPI has done a great deal for each of us. Even if XMRV does not turn out to be the 'it', they have certainly brought more research mullar to CFS then anything seen before..

Click to expand...

I think that is a great comment - the desperation in the CFS world is real, but don't forget that it applies both ways. What has WPI done for us? Yes, they have raised awareness of CFS and conducted a study that may take CFS research in some new directions, but this is very early stage work. I think their PR goes a little too far, they should not be promoting so much hope before they have a proven cure, that takes advantage of our frustration and may cause harm to the CFS cause. Have they cured any CFS cases yet?

There have been many good TREATMENT studies about CFS published in the two years, some showing significant improvement in symptoms. WPI is not the only game in town. They still have a lot to prove, and I wish them well in that. Let's see what they can accomplish, and I would like to see all these groups learn to cooperate and quit fighting with each other. How about that old idea that science is about building a common knowledge base? We really need them all to work together, and not like what is happening right now.

What strikes me as weird about this is that Veritas posted to this group as if people didn't already "know" what s/he was saying and also posted as if, we not know, and were not interested in digging.

Also the claim about not sharing the reagent.

The ownership of VIPdx has been discussed before and people have asked questions. When the answers are given some are disturned and othes are not. I don't find many of the revelations here new or of concern to me. It is to some, and this is a matter of opinion. It's been argued before.

Veritas posted that they knew the reagents were not being shared. This is news to me and to the researchers that I have been in contact with.

We are asking questions and making discoveries. It feels as if Veritas is behind the news and also without proof about the reagents.

I really don't have much interest in many of the specifics regarding some of the points being discussed here. What I objected to is the following:

1) Vertias comes onto this forum, and in his very first post, addresses us in a very "in-your-face" manner. He then coupled his fairly abrasive manner with with some pretty condescending and insulting remarks.

2) Longer-term members here who objected to this kind of disrespectful posting (from a newcomer no less) decided to "push back", and in some cases poke a little fun.

I have no objection with Vertias bringing up his points of view, and I doubt others do either. But if a person posts disrespectfully, they're going to get pushback. That's sort of the way life works. And I hope that Vertias gas gotten this message loud and clear. Sometimes moderate replies to egregious posting simply do not work.

Good points Wayne. And this has helped me realize we have some obligations in this type of accusation.

In order to ensure that that the forum is not in fact displaying false information about Harvey Whittemore by allowing this thread to persist, I have a request for any forum member interested in this topic.

Would anyone here who has good information research skills be willing to do some fact-checking for us? Let's find out if Veritas's factual claims (such as about Whittemore's assets) are accurate. Anyone willing to take that on?

Note, I am not referring to the accuracy of any 'spin' or opinions or interpretations of the facts. Simply whether the stated facts are true.

This post is acceptable because, altho it will rile alot of people, it appears to contain facts. We as Forum participants have to determine whether those facts are correct and if the authors conclusions are correct. Of all the threads I actually think it would be terrible to lock this one.

I've heard these things for several months from several people I trust. My guess is that the facts are all true; the Whittemore's do and have owned VIP Dx Labs for several years. Dr. Mikovits is the Labs vice president. They are pursuing some sort of patent.

VIPDx - That they owned VIP Dx labs certainly startled me. I was relieved when someone pointed out that if you read between the lines that you probably could have inferred this. Honestly, because we don't know how to do that generally it would have been better if they had just said so from the beginning. They apparently bought the Labs long before XMRV was discovered. They also apparently only made their connection to the labs explicit (or mostly explicit) after rumors kept popping up about that.

The problem with the WPI's approach is that in retrospect you can infer bad things about it.

WPI - I don't. My belief is that the WPI is engaged in a very ardent quest to find the cause of their daughter's and others illness. They apparently bought what was I guess Redlabs because it was one of the few labs that did the kind of testing the Dr. Peterson and others needed. They are doing what they can to raise resources for the Institute and the quest to conquer CFS and other diseases. Licensing fees and patents and things like that are things any research institution can and should do to build up their coffers.

I don't know Dr. Peterson personally but its inconceivable to me that he would lend his name to a cause that is not about the patients. In a sense I'm a little pissed off at the WPI for putting themselves in a position in which their actions can be construed this way.

Research - While I admire and applaud what the WPI is doing pn the other hand its clear that not everything has gone well. They have contradicted themselves on that patient cohort. It now looks like there were at least 5 lymphoma patients in the cohort (see the other thread). lThis hits right at their credibility as an a research institute and its what's riled up Dr. Vernon. For all her great personal warmth toward patients Dr. Mikovits, has, a few times sounded more like an angry advocate than an objective researcher. I have heard from several people that some researchers are not getting the reagents they need. Whether the WPI has run out of them I don;t know but there are some people who are frustrated about that. I don't if its just a few (which would probably be inevitable) or alot - I have no idea. These are all little problems I think we'd all like the WPI not to have - and that they didn't necessarily need to have.

A Small Organization - For all their publicity, though, they're a small organization. I had a surprise chat with Dr. Mikovits. At one point I had noted all the errors in the original version of the website (this was in reference to something else) and she laughed and said I wrote the entire thing...I was kind of busy at the time. . If Dr. Mikovits is writing their website you can see they're stretched a bit thin. Her talent is not in writing - her talent is in labwork. They are going to make (hopefully correctable) mistakes at times. The commitment, however, from Dr. Peterson and Annette Whittemore and Dr. Mikovits is clearly there - they are all passionate about the need to conquer this disease.

Real Wealth? - I wonder if Harvey is not worth as much as we think. His thing is real estate, I believe - not a good field to be in in Nevada in the 2009. The market is still declining - people who bought houses LAST year at horribly reduced prices - are going underwater now because their house value has declined. Real estate here has been hit harder than almost anywhere else. He could have had alot of debts and could now have many less assets than he used to.

I disagree with the authors conclusions but I don't disagree with his/her ability to post those facts here. He/she did some digging - good for him/her. We can decide what to make of them. That's what the Forums are for.

For all their publicity they're a small organization. I had a surprise chat with Dr. Mikovits. At one point I had noted all the errors in the original version of the website (this was in reference to something else) and she laughed and said I wrote the entire thing...I was kind of busy at the time. . If Dr. Mikovits is writing their website you can see they're stretched a bit thin. Her talent is not in writing - her talent is in labwork.
.......................................

I disagree with the authors conclusions but I don't disagree with his ability to post those facts here. He did some digging - good for him/her. We can decide what to make of them.

Click to expand...

Hi Cort, thanks for your comments. Regarding your first paragraph, I concur. I sometimes wonder why a number of people expect WPI (or any other organization or individual) to be perfect. Isn't that setting the bar a little high?

Regarding your second point, I wholeheartedly agree with the rights of members to post facts here. I doubt there's a single member here who doesn't. The way they do it however should be open to member comments.